A Nationwide Population-Based Approach to Study Health-Related and Psychosocial Aspects of Neurofibromatosis Type 1
Abstract
Using the unique resources for conducting epidemiological research in Denmark with personal identification numbers for all citizens and the existence of a number of unique population-based, nationwide administrative registries, we suggest carrying out seven studies with the overall objective of evaluating health-related and psychosocial aspects of NF1 in a large population-based setting. Studies 1-5 are register-based studies, study 6 a questionnaire study, and study 7 an interview study. Within the second year, 1) we accomplished to prepare all patient material for study 6 and 7 and to apply for permission from the Human Research Protection Office (HRPO) for final U.S. approval to conduct these two studies, 2) to select the population comparison group, 3) to send the cases (NF1 patients) and the population-based comparison cohort to the State Serum Institute and Statistics Denmark to obtain individual-level data on all outcomes data needed to analyze the register-based studies (studies 1-5), 4) to have a final dataset ready for analyses for the register-based studies (studies 1-5), 5) to start up analyzing and drafting the manuscript for study 1, 6) and to start up drafting the manuscript for study 5.
Document Details
- Document Type
- Technical Report
- Publication Date
- Jul 31, 2016
- Accession Number
- AD1018947
Entities
People
- Jeanette F. Winther